Tuesday, March 24, 2015

Keeping the Goal Alive...?

My goal for 2015 was to stay out of the Operating Room.

Well. I made it to March 23rd?

2 months and 23 days, baby! WOOOOO!!! 

(Sarcasm)

BUT.

I’ve decided this surgery doesn’t count as breaking my goal. 

And I make the rules, so ya know, yea…totally doesn’t count.

Reason #1: This was a test, not a repair.

On Monday I had a muscle biopsy of my left bicep. This test has come up for 4 consecutive years, but the medical community has never been sure enough to warrant the procedure. A muscle biopsy is done to diagnose neuromuscular disorders (specifically, in my case, mitochondrial disorders), infections that affect the muscle, and other abnormalities in the muscle tissue. After it came up for the fourth year in a row, by the 23049820398th medical provider, my internist decided it was time to check it off my medical bucket list.

So see…it was a test, not a repair. Totally doesn’t count.

Reason #2: I didn’t go under general anesthesia

And let me just say, rolling out of the hospital 45 minutes after the surgery ended is fairly glorious. In fact, I even made it the full hour and a half home from Hopkins before the numbing medication wore off. Booyea/OW.

On the other hand, I wouldn’t have turned down an option to maybe, ya know, NOT remember the feeling of chunks of my bicep being removed from my arm. A little colonoscopy twilight, anyone?

Just saying.

(No really)

Reason #3: What was removed will, in theory, grow back

After the four specimens of my “bulging bicep" were passed over my surgically-draped body to the pathologist, he asked me if I wanted to see them.

Obviously I said yes.

Moments later I found it extraordinarily crucial to turn to my surgeon, who was sewing up my arm, and ask if our bodies work like worms.

To which she paused, laughed, and said, “Clearly you were an elementary school teacher. And yes, the muscle will regenerate."

And for that I will send an extra hearty gratitude to the power of the human body, because let me just say (with respect to those of you with a weak stomach), the specimens were not small.

No really. It’s a wonder my entire upper arm is not missing.

Although, now that I think about it, my upper arm is still under a giant pressure bandage and hidden in a sling….

Gulp...

In other news, I’m pretty good at this arm-in-a-sling situation. In fact, this entire blog post was typed with my right hand, while my left hand is celebrating Halloween a bit early by dressing up as a pufferfish. I also got dressed all by myself today! It’s almost like I just had surgery a few months ago, or something. 

Weird.

So...see?
I told you this surgery didn't break my goal of staying out of the Operating Room.
As you can clearly see from Reasons #1-3, the goal is still alive.

Obviously.

Whatever people, I make the rules.



Wednesday, March 11, 2015

A Time to Celebrate

The combination of February and March has become a bit of an odd cocktail of sobering and celebration. 

A few weeks ago, I marked the four year anniversary of my proverbial "hard drive crash." 

Four years. 

In some ways, I feel like it can't possibly have been that long, and in others it feels like at least ten.  

It's hard to believe that it wasn't that long ago that I was 30 lbs underweight, lying in a hospital bed at Hopkins, consuming mostly egg whites, rice chex, and an occasional, er, steady stream of gummy bears.

Or when I went out to Mayo in 2012, I still had all of my organs intact. In my naïveté, I thought I would spend a few days in Minnesota and come home with a sparkly little cure. 

Looks like I was a wee bit off.

If it's even possible, I think the medical community is more confused by me now then they were four years ago. This very month, I'll see not one, not two, but three new specialists, along with adding a new procedure to my "glowing" resume.

(45 minute registration ending with the very last question of - “You don’t have a pacemaker, right?” I will now start introducing myself as Lydia and Penelope Buschenfeldt…you've been warned.)

I find that I spend an inordinate amount of time dangling between that place of peaceful acceptance and burning curiosity. I desperately want to move forward and live my life in whatever capacity I am lucky enough to do so, and yet, a combination of a progressive little mystery disease and several medical road blocks halt that process every time. The thing is - I don't inherently believe that our bodies break for no reason. I just don’t, plain and simple. I also believe that our bodies can heal if given the opportunity…which begs the question - what's standing in my way? What am I missing?

For four years I have traveled to doctors all over the country. I've been on countless pharmaceuticals, IV therapies, and herbal protocols. I juice and meditate daily, and I hang out with my favorite contingent of old ladies at adaptive yoga. I could write a guide book to alternative therapies. Even with the most restricted diet known to man, I would wager a solid financial estimate that I consume more green vegetables than most, and given my proclivity towards the dear root vegetable, I assure you I have beta carotene coming out of my pores. (It is truly a wonder that I am not orange) I live, sleep, eat, and breathe an unprocessed organic lifestyle, full of love, and hope, and deep breaths.

And yet, the questions remain.
The algorithm that just doesn’t make any sense - Why, when given every opportunity, does my body continue to throw logic to the birds?

How can I really, truly, devote my life to helping and healing others…when I, myself, am not healed?

Or is it because of my path to healing that I am able to do so?

Just more questions.

And so I keep looking, and learning, but most importantly - living. 
Living in the questions.

And that, my friends, is something to celebrate. 

I've never understood those people that hide their age, or don't want to celebrate their birthdays.
They just gloss on over them with a wave of the hand and an uncomfortable grimace.

It just doesn’t make any sense.

Yes, I understand the moment when you realize you have been out of college for 10 years and you can no longer lump yourself in with the “post-collegiate” twenty-somethings.

Or when you realize the little babies you babysat in 7th grade are in college, and your first little campers are married.

I get the fleeting nature of time.

But to truly hide your age and gloss over a birthday?!?
That I don’t get.

I will happily tell the world that this Friday I'm turning 32. 

THIRTY TWO!

The world has put up with my need for ponies, and markers, and mountains, and bedazzlement for 32 years! (Much obliged, by the way)

I’ve been given the opportunity to be ALIVE for 32 freaking YEARS!

Is there a better birthday present than the chance to live?

I know it’s not given to everyone, and it’s not a gift I take lightly. 

And so despite the questions and the off-road medical adventures, I’ll keep on keeping on - putting one foot in front of the other, taking a deep breath, and seeing where the path may lead. And maybe that’s where I can really and truly find, and stay, in the place of peaceful acceptance. For there is peace that lies in knowing you are doing the one thing you can - to keep going. 

And so I'll keep going. 
Keep trying.
Keep marching on. 

And I'll celebrate.